Thursday, July 7, 2016

On excising pressure sores, cataracts and the R-word

Cataract removal in medieval times [Source]
C.'s sundry wounds - cropping up in all sorts of unexpected spots - have practically turned me into an RN. 

We had just put her on oral antibiotics for the big whopper when we noticed at shower time a fresh and grotesque injury on her foot. She has been wearing the same brace on that leg only, and without any problems for years. So, needless to say, I suspect something happened at the hands of the school staff. But without proof, there's nothing to be done.

In any case, we were contemplating (and dreading) a trip to the ER but first consulted with our neighbor/friend/pulmonologist. He told us we would only need the ER in the case of a red line creeping up C.'s leg or a fever. It was a welcome reprieve.

Now, after 4 days of cephalexin, I can thankfully report to say that both sores are healing nicely and C. is even able to walk a bit. 

In the midst of that pressure-sore mess and stress, I indulged myself with a bit of cataract surgery.

Now, in the post-op period with 11 eye drops per day and no bending, lifting, swimming or touching the eye, sleeping with an eye shield and NO MASCARA, I'm determined to delay my second eye's surgery for as long as I possibly can. 

Just before the above health issues erupted, we were visited by the sweetest, kindest elderly woman you can imagine. C.'s teacher had recommended I call her to find out whether she could help us stimulate C.

Now this woman has spent her entire adult life as a special ed teacher and lecturer to students in that field. But since retirement, she has spent much of her time designing and fashioning activity boards for blind and multiply handicapped children. She first visits them to assess their needs and capabilities and then produces a custom-made, zero-tech item using inexpensive and handy objects. She does all this voluntarily, free of charge and with a smile and congenial chatter to boot. 

Her boards weren't appropriate for C. who, we all agreed, needs music to become even slightly engaged. The Hubby promised to order online these very simple little music-playing devices that can be incorporated into one of her boards. 

At the door, she disclosed to us that one of her adult grandchildren is retarded too and told us all about her. 

Yikes, there it was, that much maligned "R-word".

But it was used utterly innocently with not a whiff of insult or disdain. I'm sure that even the most ardent "Spread the Word to End the Word" activists would have given this woman a pass. She simply belongs to a generation that's unaware of the word's negative connotations.

But I was reminded that my son - my most reliable source of relevant information - alerted me last week to the passage of a bill in our country’s parliamentary committee for legislative matters on the use of the R-word. When enacted - which is apparently a done deal - it will replace it with "intellectually developmentally disabled" in all government material.  

In local parlance, the R-word is a very common insult. So I'm always jolted anew whenever I receive  some official document with that same word in its letterhead. Since we lag behind in so many other realms - most egregious of all the de-institutionalization of people with disabilities - I presumed that this move must be late too. 

Instead, I learned that the US, for instance, only took this plunge in October 2010 when President Obama signed into law Bill S. 2781, “Rosa’s Law”, removing the terms “mental retardation” and “mentally retarded” from federal health, education and labor policy and replacing them with people-first language like “individual with an intellectual disability”, according to Spread The Word To End The Word, an ongoing campaign by Special Olympics, Best Buddies and other supporters to eliminate the use of the “R” word.  To date, most but not all states have eliminated the use of that word from their laws.
John Franklin Stephens

Some will argue, not unreasonably,  hey, it's just a word and don't actions speak a lot louder? For them, here below is an eloquent response from somebody directly targeted by the R-word.
Sometimes I feel like Professor Van Helsing, or maybe Buffy the Vampire Slayer. I keep trying to kill this thing and it just won’t die. Of course, my nemesis is the “r-word,” not a vampire.
Like Dracula, the r-word just sucks the life out of those of us who fall in its path. It spreads like an infection from person to person. It seems as though perfectly nice people who “mean no harm” get bitten by hearing others using the term while “meaning no harm.” And so it goes, from person to person, until it becomes so common that even Presidential Chiefs of Staff, radio talk show hosts, movie characters and famous political pundits use the nasty slur — then say they “meant no harm.”

To all of you who use it, let me say it one more time, THE R-WORD HURTS. You don’t have to aim the word directly at me to hurt me and millions of others like me who live with an intellectual disability. Every time a person uses the r-word, no matter who it is aimed at, it says to those who hear it that it is okay to use it. That’s how a slur becomes more and more common. That’s how people like me get to hear it over and over, even when you think we aren’t listening.

So, why am I hurt when I hear “retard.” Let’s face it, nobody uses the word as a term of praise. At best, it is used as another way of saying “stupid” or “loser.” At worst, it is aimed directly at me as a way to label me as an outcast — a thing, not a person. I am not stupid. I am not a loser. I am not a thing. I am a person.
[Source: "I Am the Person You Hurt When You Say the R-Word", John Franklin Stephens, Special Olympics Global Messenger, in Huffington Post, May 5, 2014]

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